“Count Your Many Blessings…”

Count your many blessings, count them one by one.  Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon.  I remember as a youth singing the song in church.  I must have sung it plenty of times, because the lyrics are stuck in my subconscious.  And, as things int he subconscious tend to do – they often pop out at just the right time.

rare supermoms

 

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad.  25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

Mom and Ken anniversary

 

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen.  Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband.  I was greeted by my beautiful daughter and lots of hugs and kisses.  Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad.  We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew.  Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again.  How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life?  How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted.  That song started in my head.

“Count your many blessings…”

HappyMothersDay

I thought of the friends I have who are desperate to be mothers.  The friends who had to struggle to have the children they have.  The friends who have miscarried, and friends whose young children live in Heaven.  I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago.  I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired.  How lucky am I to need a list to shop for Mother’s Day Cards?  How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone.  But, I am aware that those years will come all too soon.  For now – let me run, and visit, and hug and chat.  Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight.  I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow.  A rampant virus, and her rotten immune system are not a good match.  She won’t plant with her science class the way she likes to.  She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease.  A day of  differences and disappointments.  A day she will handle with the same graceful smile she uses for every other aspect of her life.

My_Greatest_Bles_4bce6cc17bc3d

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!

 

There are just no words

Tonight it’s not about us.

No matter how hard I try.  No matter how much I trust.  No matter how much I pray.  There will be some things I will never understand.  Ever.

Today a generally healthy 11-year-old boy, a 6th grader from the neighborhood died.  A few days ago he stopped breathing, and today he is gone.

The details leading to the tragedy just don’t even matter, as much as the fact that it happened at all.

When I began teaching, his mom taught with us.  It wasn’t long before she would take childcare leave to build her family of three.  We were not close friends, but colleagues still the same, and close enough that I am absolutely sickened by the loss she and her family are enduring.

Years later the children would come, first through my school, then another local elementary school.  The two boys are in Junior High.  The 8th grader, the oldest, is just two years ahead of the little brother who passed.  Their sister is a 3rd grader.

The family is just like any of ours.  The mom was a teacher, dad a police officer.  They were the “regular” family.

This is the stuff nightmares are made from.

Even though we live in a “big city,” our borough is a small town.  There is so much interconnection in this area it seems everyone knows someone.

I was not “friends” with the family.  We chatted when we saw each other, but our kids didn’t play together.  We weren’t “close.”  Yet still I am heartsick.

I know families who have lost children.  I know mothers who continue to function after burying their babies, and fathers who get up and one day go back to work.  I am in awe of their strength.  I can not imagine the depths to which the loss of a child changes you.

And we seem to hear of it all the time.  There are tragedies, school shootings, traffic accidents, and the like.  There is cancer and its far-reaching effects.  There are countless rare diseases that I learn more about each day, that rob parents of their children way too soon.

Chronic illness is not fun.  It can be downright difficult to bear at times.  But tonight again I will thank God for Cowden’s Syndrome, because despite the headaches and trauma it can cause us, it is a blessing.  We have a warning system.  We have constant screenings that will likely protect us from the ominous cancers looking to attack.  We are blessed.

I do not by any means think that any type of loss is easy to bear.

The loss of my cousin shaped my existence as a person, but even I never fully recovered.  I still pray for her parents and her sister.

I was in the 6th grade when a friend from my church was hit by a car and killed on the school bus stop.  No criminal charges.  Just regular kids playing.  And then they weren’t.  I remember the whole experience vividly 30 years later.

A few weeks ago I stood by the side of a work associate whose 39-year-old daughter had died of cancer.  No words.

One of these parents told me there is a reason there is no word to describe a parent who has lost a child.  The grief can not be contained in words.

I just can not for even a moment imagine the shock and trauma when you put your healthy 11 year old child to bed, and he doesn’t get up.

sometimes the hurt

Tonight my heart is with the family.  The mom and dad, the brother and sister, as well as all the extended family and close friends whose lives are forever altered.

I will pray that God holds them all so tightly, and that He binds them close together, and showers them with His love.

There are just no words.

Realizations…

I love my family. Especially when we get some time away from the nonsense of daily life and just get to enjoy each other.

Vacations are necessary. Big or small, they are critical food for the soul.

Our life isn’t easy, but I am extremely proud to be the mother of a graceful, articulate and well mannered young lady who is learning to take a lot in stride. She isn’t perfect. None of us are, and there will be growing pains as she defines who she is, but I am already proud to be her Mom, and I know that pride will continue to grow.

I have spent  the last 5 days amongst thousands of people and there is not one who I would willingly trade places with. I have seen kids…oh so ill and the anguish in their parent’s eyes. I have seen whiny, bratty kids, with parents who I am glad not to know.  I have seen kids who struggle, making every attempt to fit in, in a world that is overloading their senses.  I am grateful for our struggles, they have made us who we are. I do not want anyone else’s.

It is nice, and necessary to spend a few days with no doctor’s appointments.

I am glad to have a Mom to watch my dogs and give them the royal treatment for me.

I miss writing every day.  This bog has been therapeutic for me.

I can not stand the touch screen on my daughter’s IPad…and likely won’t write again until we are safely home.

These are my realizations for today.

Be well all!

 

Frustration…

Angry Penguin
Angry Penguin (Photo credit: Wikipedia)

It felt like anger at first, but it isn’t.  Sometimes even at my age I forget things I already knew about myself.

I cry when I am frustrated and overwhelmed.

I am not really angry.  That takes up too  much energy and I have none to spare.  To be angry there has to be a target of your anger.  And really, who or what am I going to be angry at?  And what purpose would it serve?

Now frustrated is a different story.  Frustrated is when the control freak can’t sit long enough to organize the pile on her desk. 

Frustrated is the dead sod in the yard, and the cucumber and zucchini that seem to have developed a “creeping crud” fungal infection.

Frustrated is when old “life” problems, like credit and identity theft issues that were solved three years ago start taking up time, and there isn’t much to spare.

Frustrated is when you can’t get a doctor who takes your insurance (despite countless phone calls) to order the tests you need so you can stay well enough to be on top of the (not so bright) doctors who are treating your daughter.

Frustrated is trying to plan some FUN events when doctors appointments keep getting in the way.

Super frustrated is having to go to NYC to see the knee surgeon tomorrow, on a perfectly nice – I should be scheduling a play date for my kid- kind of day.  Frustrated is being unsure how to get my point across without being escorted out by security, and/or without scaring my kid.

Frustrated is going to the appointment alone- when I really want my husband there, but knowing it is not the kind of appointment he should take off work for.

Frustrated is wanting so badly to let some of this worry go, and knowing I can’t.

Frustrated is a new medical issue, every time I turn my head. 

A toddler girl crying
A toddler girl crying (Photo credit: Wikipedia)

Frustration IS Cowden’s x2!

Sometimes I cry when I am frustrated…  but everything always looks better in the morning.  ( I hope!)

Father’s Day

Some days it’s not about Cowden’s Syndrome, or tumors, or doctor’s appointments.  Some days life just is about life.

Father’s Day.  A day to celebrate the fathers in our lives.

My husband is the best dad in the world.  I mean it.  And he is a pretty amazing husband too.  There aren’t enough words to describe how lucky I am.

My Dad, tries his best.  He and my mom divorced when I was 5.  He has struggled with his own life through the years, but we have stayed in contact.  He does the best he can.

My stepdad, married my mom 24 years ago.  He inherited 2 bratty teenagers and has loved us as his own from the beginning.  He has put us through college, paid for 2 weddings, fixed houses, and been there through it all.

My Pop, my mom’s Dad is 92.  A WWII veteran, and a retired firefighter, he is amazing.  He and Grandma still live on the second floor of their own house.  We lived in their house for 15 years, and they became a second set of parents for us. Now they are Great Grandparents.  They pick up my daughter on half days, and love spending time with her.

Today my heart is heavy though. My stepdad’s father is suffering.  When his son married my mom 24 years ago, they had no grandchildren.  They didn’t expect to start out inheriting two teenagers, but they did.  And they handled it gracefully.  Over time Grandpa came to love us in a very special way.  He is especially attached to my daughter, who he calls “Sapphire.”  He even made sure she had a special sapphire necklace to always remember her name.  He has been brave his whole life and has fought cancer in more places than I can count.  He has been in the hospital for a month now, and this is it.  He is ready.  He has had last rites.  He has asked his boys to take care of their mom.  He has told God he is ready to go.  So we wait.

Today we remember the fathers, grandfathers, and great grandfathers that have touched our lives.  We hug some, and we miss some.  We acknowledge their impact on us.

And today in my house, we whisper constantly a prayer to God.  Today it’s not about test results or surgeries.  Today we ask that He be merciful.  Grandpa is ready to rest…